Sunday, September 22, 2013

My Mother's Medical Nightmare Part 4: Home and back again

This was now the second bout with pneumonia we were facing. It was not as bad as the first, we had caught it sooner and were very hopeful about it. We were beginning to make plans to take my mother home after this. After extensive conversations with Medicare, in which I finally got on the list to be able to speak to them on my mother's behalf, I discovered that if she was out of hospital and nursing home for 60 days, and after that she had a three day or more hospital stay, she would be eligible for another 100 days of rehab, which she would NOW need because all of the progress we had made before was for naught.
She was now as weak as she was before. We would have to start all over again.
After a week, the doctors announced they were sending her back to the home. Our plan was to transition her home at the end of the month, February 28. We were paid up at the home until then.
But, something was wrong. My brother and I were visiting her and saying to ourselves and each other that she was not herself, that something else was going on, that maybe the lungs were better but she was still sick. She looked terrible.
I called a meeting with the doctors and made them come in.
"I know you're thinking of sending her back but she is still very ill. Something is wrong."
They told me her lungs were better and she could continue antibiotics at the home and she was fine. I shook my head.
"If you do this, it will be a mistake."
They said the plan was still tomorrow. That evening she began vomiting and having terrible diarrhea. They were forced to reconsider.
After testing, they discovered she had a Clostridium difficile bacterial infection. Better known as C diff. The antibiotics had killed all the good bacteria which kept that bad bacteria under control. She was immediately moved into ICU and began the second half of her battle. C diff is incredibly difficult to get rid of. She was sick for weeks. Finally in mid March, they began to say she could be released.
I made arrangements for home health care to come for 8 hours a day. Also arranged for Physical, Speech and Occupational therapy to visit. The most we could get on insurance was once a week. I knew it would not be enough.
It was very rough when she first came home, she had two more trips to the hospital because she was not quite well. We had some changes on the food and we had some adjustments on medication. My daughter Cassandra really stepped up to taking care of her grandmother and we soon realized we were going to need 24 hour nursing help. I cannot begin to tell you the financial devastation of that.
After several ups and downs though, we got a routine and discovered some really amazing caretakers who were so caring and kind and became just part of the family at some point. We had two favorite live in caretakers.
But the PT situation was not going to get any better. Truth be told, my mother got very good at manipulating her way out of exercises many days and for some reason, the PT guy, as great as he was refused to even try to stand her up, which pissed me off to no end. He said we would get there but HE NEVER DID. After three months, he had still not even tried to get her in a standing position.
We finally got a regular primary care doctor and what I have to say about him is that he is okay but nothing more. He does the bare minimum if that. But he is more or less there. We tried a number of things. One was Mobile Docs who come to the house. The doc that came was okay but when we called to ask a question, the reception couldn't be bothered to page doctors or make any effort. Worst medical office ever!
Then began the struggle to get her Medicare Part B. That is a whole other story. She didn't have it but the previous nursing home said she did and then when they found out she didn't, long after she left, they sent a huge bill. I hate them.
The whole time I tried to talk to Medicare but they refused to talk to me even when my mother said they could, made us miss the deadline for enrolling her and I had to go down to the social security office and beg them to find some way to get her enrolled.
So now, we enter limbo. Waiting out the sixty days. And after that we have to hope she needs to go back in the hospital.
WHAT SADIST MAKES UP THESE RULES? Why can't we just get the medical care we need? Why are we running a clock all the time? Running with limits.
While she was in the hospital, they did a pet scan which revealed a possible tumor in her saliva gland. They were convinced this was cancer. THIS was the cancer they were looking for. This was it. They biopsied it. It was benign. They were almost disappointed. Still convinced that she had cancer, still watching those nodules in her lungs that now had not grown a centimeter in 9 months, they told us we needed to see a pulmonologist.
But the wait time was 2 months.
I asked them "If you had cancer, would you want to wait two months?"
They called back and postponed it further. I yelled. They told me the doctor wanted it this way. I asked them "Do you really believe in waiting this long to diagnose cancer?"
They would not budge.
They called back again and pushed it another two weeks. I hate them even more.
She had an appointment with a pulmonologist that we had been waiting for now four months!
She was getting a pet scan, cat scan and breathing test and they were having a second, third, fourth look.
But I knew. I knew it was not cancer. They finally see her and admit to me that it is NOT cancer. That it has not grown in a year and it is not cancer. We had a follow up at the end of August and those nodules have not grown. They don't know what they are but they are not cancer. But still, doctors keep bringing it up and saying it is cancer.
I had a fight with an ER doc who insisted she knew it was cancer.
I told her "At what point does your giant ego allow you to admit you're wrong?"
At what point do they admit that the Lisinopril is the cause. When will that happen? I don't know.
She was home from March 29 through August 3rd before she needed to go into the hospital and they admitted her. She had terrible diarrhea, we thought it might be c-diff again but turns out she was badly impacted. Lack of physical movement will do that to you. She was in the hospital for over a week. I immediately began looking for a skilled care rehab so we could get her six days a week of therapy. I found one.
I began another fight with Medicare who made her stay in the hospital two extra days because they had not properly updated her records. But I finally got her admitted. This rehab kind of sucks. There were a lot of perks at the other place we had not realized were even there. But my parents insist on staying even though it is not ideal. And the speech therapist is leaps and bounds better than Tammy.
Last week, my mom had to be admitted to the hospital again. Her third bout with pneumonia. She was there for about ten days with respiratory distress. Three nights ago, she was a half hour away from being put on a ventilator and miraculously, her CO2 levels began to fall into normal ranges moments before they intubated.
She is now back at the skilled care and I will continue the fight to keep her healthy and happy and get her back to mobility.

1 comment:

Fran
said...

Thank the Lord that Mom has you as her Advocate. Healthcare in 2013 is a travesty and it will get no better until these yahoos in Congress decide to quit fighting and endorse Obama's plan. At least try it!! No one else has offered anything worth while. At least he is trying Something!!My love and thoughts and prayers are with you and yours. If you need me call.